Category: Outside Research
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ICOMBO is conducting a survey about School Placement of Multiples. The survey is available in English, French and Spanish. This is being done in response to our members all over the world saying that they often aren’t being consulted when school placement for their multiple birth children is decided. The survey will be open until March 31st 2019.The results will be presented at the next ISTS Congress in Hong Kong in November 2019. The results will also be made available to multiple birth groups all over the world. The hope is that this information will help foster change in school policies about placement of multiples in school.English version – https://www.surveymonkey.com/r/PZWTD6HSpanish version – https://www.surveymonkey.com/r/6KST6WLFrench version – https://www.surveymonkey.com/r/6DD6LKP Right now the United States is second in the line of participants of this survey! Let’s see if we can knock out the first place for the USA!

Please take a moment to read this information and participate in this Global Initiative!

In this world-first initiative, we are giving twins and multiples the opportunity to steer future twin and multiple-birth health research in the direction that matters to you.Help us to identify the top research priorities for twins and their families to enjoy optimal health and well being.

We are launching the Global Twins and Multiples Priority Setting Partnership with TAMBA UK, and St George’s University of London. This initiative seeks to identify the top 5-10 priorities for research into twins’ and multiples’ health. Ultimately,our aims are to save lives and to improve long-term health outcomes for multiples.

We believe there is insufficient attention given to the specific health needs of multiple-birth families even though the number of multiple births has increased overtime.

It is important that decisions about future research priorities don’t rest with researchers or government funding bodies alone. Our partnership wishes to hear the voices of all stakeholders in multiple-birth care – twins, higher-order multiples, their parents and families, GPs, obstetricians, pediatricians, midwives, maternal health nurses and educators.

Ensure your voice is heard by filling out an initial 15-minute online survey. You’ll be asked to nominate up to three important unanswered research questions on the health of multiples relating to issues such as pregnancy, birth, parenting, childhood development, diseases, emotional and mental well being etc.

You can complete the survey or find out more information by clicking on this link. The survey closes soon so please take it ASAP!

We would also appreciate if you could share this survey with others in your circle e.g. twin friends and families, multiple-birth clubs, your GP and specialists. It is open to everyone who supports twin lives and well being.

Let’s work together to identify the most pressing issues needing research, and to make sure research funding and resources are going where they are most needed. Generations of multiple-birth families – now and in the future – are counting on us.

Twin to twin transfusion syndrome (TTTS) is a rare condition that occurs during a twin pregnancy when blood moves from one twin (the “donor twin”) to the other (the “recipient twin”) while in the womb. TTTS is a complication that specifically occurs in identical (monozygotic) twin pregnancies that share the same “egg” sac (monochorionic) that may or may not share the same amniotic sac (monoamniotic). TTTS usually develops between 15 and 26 weeks of pregnancy. The donor twin may be born smaller, with paleness, anemia, and dehydration. The recipient twin may be born larger, with redness, too much blood, and increased blood pressure, resulting in an increased risk for heart failure. Treatment may require repeated amniocentesis during pregnancy. Fetal laser surgery may be done to interrupt the flow of blood from one twin to the other. After birth, treatment depends on the infant’s specific symptoms. The donor twin may need a blood transfusion to treat anemia. The recipient twin may need to have the volume of body fluid reduced. This may involve an exchange transfusion. Medications may be given to treat heart failure in the recipient twin, per the U.S. Department of Health and Human Services/National Institutes of Health

We are teaming up with FertilityIQ to encourage fertility patients to review their fertility doctor. FertilityIQ will make a donation to Multiples of America for every review we provide.

FertilityIQ was started a few years ago by a husband and wife team to ensure other patients get reliable & helpful information on doctors, clinics, costs and more. Everything on the site is free and there are no advertisers on this site. You are encouraged to visit Fertility IQ’s website to learn more about this company before you send in your personal review.

You can leave an anonymous review of your fertility doctor(s) by starting here https://www.fertilityiq.com/survey-intro – make sure to provide lots detail because thousands patients will rely on what you have to say.

A few last notes:

In the review, when asked who referred you to review, type “Multiples”. This will come at the end of your survey assessment. This is how fertility IQ will keep track of the organizations participants.

If you’ve been treated at multiple clinics, you can provide multiple reviews (we get credit for each!)

Feel free to share the link with others you may know that have sought fertility treatments. Multiples of America, will receive credit for every review that cites us It doesn’t matter if they are a member of a member club.

The donation window will expire on November 27, 2018, so please take a few minutes to leave your assessment before the closing date!

Please Note: By clicking the link and submitting your assessment to FertilityIQ, you must agree to the terms of use and privacy policy provided by FertilityIQ. Any information provided is done so with the explicit knowledge that it is done willingingly to complete the assessment, with the full knowledge and consent of the user. Multiples of America is not responsible for the content of the FertilityIQ assessment. Multiples of America will not share your contact information with any third parties without express consent.

Research with multiples contributes to our knowledge of issues relevant specifically to multiples but also has the potential to contribute transformative insights to our understanding of health and disease for the whole population. ICOMBO is gathering information to present to researchers about what multiples (and their families) would like if they are involved in research. The first step is a survey to find out more detailed information about how people feel about being involved in research. It is important that we can get the message to researchers about how we want multiples to be treated, so your input will be very valuable. I know some of the questions may seem a bit odd to those not familiar with what some research studies involve. However, these will help us guide researchers on what we may accept when asked to participate and then they can design their studies accordingly.

This survey is for both multiples themselves (if they are old enough to make decisions about their involvement in research) and parents of younger multiples.

Please share far and wide so we can get as many responses as possible. If you have any questions about this survey please contact Carolyn (carolyn@icombo.org). Thank you.

* ICOMBO stands for the International Council of Multiple Birth Organisations. We are a voluntary organisation whose aim is to raise awareness of the unique needs of multiple-birth infants, children, adults and their families promoting their health, education and welfare.

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Hear ye, hear ye……Multiples of America is coming this summer! I will be there to get things started! Come join me! – Alexandria Town Crier #AlexandriaTownCrier #MultiplesAlexandria2019 #supportmultiplied What To Do and See In Alexandria This summer, Alexandria, VA is the place to be! Join us for Convention 2019 and check out all the fun things to explore while there. Check out the video – Top Five things to Do/See in Alexandria, as all are[...]